On the 16th of April, in the context of RARECAREnet – a three year EU-funded project aiming at building an information network to share data on rare cancers to improve diagnosis, access to treatment and expertise, the European Cancer Patient Coalition (ECPC), the RARECAREnet staff and the Belgian Cancer Registry organized a meeting to discuss the quality of care for rare cancers in Belgium and the best model to ensure that this care is optimal. The meeting was attended by representatives of the Belgian Ministry of Health, Wallonian and Flemish Health authorities, researchers, oncologists and european societies (namely EORTC and OECI).

According to Dr. Gemma Gatta, project leader and epidemiologist, “the ultimate objective of this project is to provide patients with the best treatment and diagnosis options to improve clinical outcomes for rare cancer patients in Europe. The Cross-border healthcare Directive and the development of the European Reference Networks provide a great opportunity for rare cancer patients in Europe”.

For Dr. Annalisa Trama, staff member of the RARECAREnet project who presented the quality criteria for identifying centres of expertise for rare cancers, the project and more importantly its predecessor, RARECARE, have been instrumental in developing a definition for rare cancers and a new list of rare cancers. Rare cancers are those with an incidence of less than 6 per 100,000 persons per year. A total of 198 rare cancers have been identified based on the above definition. 

Benoit Mores, from the Belgian Health Ministry, presented the objective of the current Government, to promote excellence in diagnosis and treatment of rare care patients by promoting specialized centres and adapt the clinical pathway to these rare pathologies. Mores defended the idea of a unique approach for rare cancers and the added value of reference networks.

According to Sabine Stordeur, from the Belgian Health Care Knowledge Centre (KCE), who talked about the organisation of care for adults with rare or complex cancers in Belgium, “Currently, patients with a rare/complex cancer can be treated in any Belgian hospital registered with a care program in oncology. To date, no specialised care programs with recognised clinical expertise in specific rare cancers have been certified”.

The complexity of healthcare systems in Europe and the local and regional differences and competences need to be factored. Mr Geert Peuskens from the Flemish Ministry for Welfare, Public Health and Family, presented the perspective of the Flemish Government to rare cancers and the complexity of the division of competences between the European, federal and regional level. For Mr. Peuskens, Flanders should develop a Flemish Network for Rare Diseases to encourage the concentration of expertise and develop clear guidelines to ensure high standards of care. To succeed, a close collaboration of different healthcare organisations is required.

Ms. Kalliopi Christoforidi from the ECPC said that rare cancers pose particular challenges to patients due to their low frequency and specificity and that they urgently need to know where to get treated in each country. She also stated that patients should be consulted in the identification of centres of expertise in European countries especially with regards to the proposed quality indicators.

Participants stressed the importance to act quickly due to the call for the establishment of European Reference Networks and agreed that the results of the RARECAREnet studies should be made available to the community at large. Further dissemination activities would be required to promote effective policy ensuring high quality of care for patients in Europe.

Results of the RARECAREnet studies will be presented to health authorities in Bulgaria and Slovenia, whose cancer registries also took part in the project, in the next months.